We have been home for a couple of busy, busy days. Daniel has been crazy busy doing absolutely nothing. He seems to have not forgotten how to plant himself on his corner of the sofa and do nothing but watch NFL network and play video games. A couple of days of this and I will need to put a stop to it though. We do have a brand new sofa and it is Super Bowl weekend so I will let it slide. Besides, I am so busy still unpacking, cleaning and settling back in I hope to be done by Monday. I got a chance today to get out and get a bunch of snacks to make tomorrow special for him and I was not happy to find out that in the hour and a half that I was gone none of the tasks he needed to do got done. Not very encouraging. There is so much home health care to having him home between IV meds and pills and eating and fluid intake and exercise it is 24/7. We need to be vigilant to not let it get away from us or we can get behind a schedule. We are waiting for his Monday’s CMV blood tests (results will come late Tuesday) to determine if this current treatment is is working to bring down his current levels. Hopefully they are because if not I am afraid he will need to be readmitted and this far into the transplant I just so want to be moving on with this process. Today we are DAY 80 post transplant and overall doctors are pleased. I know that sounds crazy with this set back, but overall he is on track for his 100 DAY milestone. I posted this cute picture certainly not because Daniel was cooking breakfast, because he wasn’t but because I thought he looked like the Dalai Lama in his snuggi blanket. This kid is remarkably at peace with where he is at in his journey.
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Well all things considered, I had a nice couple hours away from the hospital. By the time I finally left at NOON. I had made Daniel breakfast, got all of his work organized, changed his bed, cleaned my bed back to a sofa so he could work all day sitting at a table and got him in and out of the shower. Finally after after great news in rounds I left. When I returned (half a dozen phone calls later) three and a half hours later, Daniel admitted that it was probably not such a good idea and it may have been too long. Warming up his own lunch did not go so well so he was starving (Hello- room service perhaps, multiple snack options in our cupboard-whatever). He got a lot of homework done, but had a lot of distractions. All and all he realized how much he needs me and I learned how much I have enabled him. So I guess we clearly understand eachother. The picture below is perfect example of this. Daniel likes only the ice cream cone and I didn’t want to waste the ice cream. The perfect pair!
As far as our GOOD NEWS from the doctors, it looks as if we may be able to be discharged tomorrow. With yesterday’s CT scans showing marked improvement in Daniel’s lungs which means a decrease in CMV in the lungs. It would have been great to have a large decrease in CMV viral copies (units of measure) in his blood but that was not the case. There was not an increase at least, but not a large decrease, but nevertheless there was a slight decrease and I will take it. Plus last night Daniel was able to spend his first night without needing oxygen. If he can do this again tonight they will consider possibly discharging us tomorrow. With this comes a lot of stipulations. He will need several upon several hours hooked up to IV meds and fluids at home but the key is that he is at home. He will need to come back for frequent checks to the hospital and on Monday if his blood levels (results wont be back until Tuesday) are not where they need to be he will require a change in protocol and that will likely mean readmittance until we can finally knock this thing out. The doctors are not comfortable being patient with this virus and do not want to just watch and see. Let’s hope getting him home and comfortable in his own surroundings gives him the boost he needs. Maybe some Super Bowl food and Celebration will be just what he needs. I personally think chicken wings may just be the trick he needs. SO we are off to bed hoping for a hopefully good last night. I am fully prepared for it to not turn out that way. I have learned that this is the way things go and we don’t get our mind set on things too much around here, but tonight we will be saying a little prayer for deep breathes and no oxygen support and a ticket out of here tomorrow. Last night we found out what implosion means. Small spaces are not conducive to family meetings. Without getting into details or sharing too much, let’s just say that the only way to explain it is that right now THIS IS WHERE OUR FAMILY HAS TO HAPPEN. There is nowhere to hide and nowhere to escape. And it was a blow out. In fact the night before last Daniel and I watched the movie Shawshank Redemption (which he loved by the way) and he correlated us as being in the hole. When I asked him about it he said that he felt that he was stuck here but that at least I got to leave. Anyway last night when Rob and Matthew both came and brought dinner, some school and family issues that needed addressing needed to be addressed. Mom hasn’t been home in three weeks so guess what. Room 761 is home when we are all in it. Tempers flared (yes mostly mine) , voices raised (yep, mine again) and before long Daniel was painfully upset and needed to leave to the outside room that is still attached to ours that I have never been so grateful to have. He tried to escape to the bathroom but we had just had Chinese for dinner and well (yes, that was my fault too-just kidding). After the match was over and we were exhausted (but is the conversation ever REALLY over). Rob and Matthew left and Daniel said he couldn’t handle them being up here anymore if it was doing to always end in arguing and yelling. I tried to explain that it is hard to avoid when we have to take care of family matters and this is the only place to do it when we don’t get to see eachother any other place and without hesitation he demanded that starting tomorrow I am to leave. He instisted that he is stuck in here. I am not. He has to stay, I do not. There is nothing that is keeping me in here. In fact he will take care of himself for the day and maybe get more done with me out of his way. I don’t need to be here at all. REEEEEEEAAAAAALLLLLY. He then said he loves me and he feels fortunate that he gets to have me here all day and night and he is grateful and he knows a lot of the kids here don’t have that and he appreciates everything I do for him. And he loves every minute I am with him, but I don’t have to do it and he can spend the day on his own. Then we went through a daily scenario about, who will bring him his toothbrush, who will bring make him breakfast and lunch and bring him drinks and the urinal and the remote and the homework and the spirometer and get him to walk and get him to stretch and stop the beeping machines and be here for the doctors every 30 minutes and, And, AND. He seemed to have an answer for it all and said he would call if he needed anything, then backtracked and told me I would definatly need to be back for dinner. Soooo. I am getting ready to leave this morning. I am making my bed and cleaning up and I will see if he is up or not before I leave. We will test the theory and see how things go.
I think I will go home and take a very long hot shower. It has been three weeks since I have been home so I do not know what to expect. I will play with the dog and maybe just have a long nap and then come back and see how the day went. I wonder how many phone calls I will have, and see if I can stay away past noon. We are eagerly waiting for tomorrow evening to get the results back from Daniel’s CMV level testing so we can work on an exit strategy from this place. Meanwhile As we wait we have learned to knit with straws and done the Tim Taylor and upped it to the nth degree. I have completed another window mural (the silliest yet) depicting Deflate Gate. We have had several pulmonary tests to try and help Daniel increase his lung capacity. We have had umpteen homework avoidance attempts. And a phenomenal first meeting and Daniel’s P[R]eview show with Daniel’s new friend Mark Hass from CBS, Channel 4 news. Oh and I have had time somehow to sneak in three friend visits. Amazing, and exhausting. Overall Daniel is feeling really good and we are into the days of just constant doctor and nurse checks. How can a day filled with nothing to do be so darn busy? I am missing Matthew. I haven’t seen him in several days and I am really missing the comforts of home. I miss my bed and my kitchen and home cooking and my stuff just being near and accessible. We have been here three weeks tomorrow and I have about had it. I am really hoping these tests come back lowered so I can see the end in site. I am homesick.
Daniel has really turned it around in the last 24 hours. So much of it is drug related. Yes he still definitely has the issue of the CMV virus to contend with but that takes time and the antiviral meds that take their sweet time to do their thing. On top of those drugs he got two others today that are once a week to combat the virus and build his immune system. He is also still getting the bone marrow booster daily because the anti viral medicine is knocking down his marrow, but this is to be expected right now. His BK virus is somewhat behaving and although he has blood clots he is passing he is now controlling pain with a morphine pain pump. He is using it sporadically and thank goodness it is not making him sick. His nausea is under control because he is taking less pain medicine and because it is he is awake and back to eating his normal self. He is a very determined kid. I think this is because he heard the doctors say (threaten) after 2 days of sleeping so much and not eating and throwing up that they will need to reconsider reinserting the NG tube by Monday…well Daniel just polished off a full meal from Elway’s steakhouse for dinner so I am not really concerned of this happening.
Actually his whole last night and day has been stupendous. He has eaten well, moved well and had maybe one of his best radio (call in) shows to date. He did a bunch of homework and has been in great spirits. I hope I can keep up with his pace through the weekend. He is really demanding with his needs but continues to be appreciative and respectful to me and all of the nurses and doctors here. I could not be more proud of how well he is coping with all of this. I am repeatedly told of what a great kid he is and how well he is handling this but I don’t really need to be told this. I already know it. This reminds me of someone else that has handled things in stride. One year ago today, my sister Rochelle was diagnosed with Breast Cancer and began her year from hell. It is certainly far from over but so is her life. The two of us have grown closer than any sister’s possibly can as we have supported each other through the unthinkable. My minute by minute with Daniel has helped her take her mind of her minute by minute problems and distract her from her health problems so she wouldn’t obsess (like she tends to do-sorry sis, I couldn’t resist that one). She has been a constant liason to my parents that I have not been able to be for a variety of reasons. We have been at each other’s fingertips from the start of the year. From her diagnosis, to my having to leave her devastated in recovery at her surgery to be with Daniel at the beginning of his journey at her urging to my surgery with her unequivocal support to her every minute with me on the phone since the second of Daniel’s diagnosis. In fact that is why I couldn’t get this blog done because we couldn’t stop texting with each other. We constantly laugh and cry all day with each other and I wouldn’t have it any other way. We both know we couldn’t have gotten through each day without each other and there is not a morning that goes by that there is not a text from my sister waiting for me on the phone. If I haven’t checked in by a certain hour to let her know everything is fine I know she is worried and I am in trouble. (I told you obsessive) I try very hard to get to Rob first, but that doesn’t always happen. I made a big sign for her (with her kids) before her surgery that reads BE STRONG that we hung in front of her bed so that she could see it when she woke up from recovery. That was almost a year ago. It still hangs there and reminds her of how strong she is. She tells me the same when I am tired and to Daniel when he struggles but she is truly one of the stongest people I know. As she reaches this milestone I have to say how proud I am of her. She is strong and she is beautiful and she is courageous and she is loved and she has a long future ahead of her. She is a survivor. So you know how the saying goes one step forward, two steps back? Well, not this time. No steps forward. Daniel was doing so great and we honestly thought we would be heading home today or tomorrow, when the doctors came in last night and told us that unfortunately Daniel’s CMV (cytomegalovirus) counts have gone the other direction. Instead of going down to 1,000 where we would like them to be for a confident release where he would go home on one IV med a day his counts went up three fold to over 360,000. Because of this we will know shift to a different virus medication that is unfortunately very hard on the kidneys. Plus to top it off he is having the terrible symptoms of the BK virus back again. The worst part of this one is excruciating pain with urination. We are talking off the charts. Nothing is worse than seeing your child scream in pain. We are trying to get his pain under control but now we are playing catch up and trying to get on top of it. A lot of it takes time to kick in. Just trying to get him comfortable is our goal. And JUST when he was feeling so good and getting back into great shape and spirits. He was starting to walk around the floor again and starting his homework and was having such a good time with all the doctors and nurses with this crazy “deflate-gate” thing. Now I honestly feel like we are back to square one…well not really. I know that is crazy thinking, we are so far from square one and I need to keep reminding myself of this, but at times like this it is hard to remember this. THis is all expected they keep telling us. It just stinks, they keep telling us. We just need to keep on top of this, they keep telling us. It can get away from us very quickly and can go very bad they keep telling us. CMV is very tough to treat. Heavy Sigh. So Rob brought some more toilet paper and tissue and a few more movies and will do another load of laundry and we will prevail. I guess more time will be spent sleeping than watching football this week (well maybe not, but possibly, nah, who am I kidding… football is is stronger than pain medicine, In fact, football talk is our best pain medicine and I think we should keep it that way. Onward and upward. I will hope for a peaceful night with few awakening for painful peeing and that we ease our way out of this pain and move a step forward instead of backwards and take baby steps out of here sooner than later.
Today was about as close to perfect as it can get in the hospital. Not only did Daniel eat all day he got his NG tube out. It was within seconds that his attitude improved and he was a very happy kid again. He finished a fabulous radio installment and was asked to do an interview for a magazine featuring the Seacrest studio. Matthew came up for lunch and stayed the whole afternoon and I have NEVER seen the two of them get along so well. We all laughed until we were crying all afternoon. Daniel was taken off precautions which meant he was able to finally leave the room. And leave we did, we walked several laps with Matthew and after Matthew got reprimanded by the doctor for whipping Daniel with something harmless, favorite Nurse Marion had Daniel’s back and stealthily passed Daniel a syringe full of saline on our final lap. Daniel got Matthew back with precision and they were even (for the moment). Now that Daniel was free of all constraints for the afternoon and full of energy, the two boys played with the Wii. Hilarity ensued until Daniel had to grab oxygen to gain the upper hand. Afternoon wrapped up with a great meeting with Daniel’s football fanatic friend and psychologist Bob and that was Matthew’s cue to leave. As soon as Bob left the room, Daniel couldn’t stop talking about how much fun he had with his brother. And although Matthew would never admit it, I know he had just as much fun. What an awesome day. I am sure Daniel will sleep well and I know we will end the day with him thanking me for a great day. These great days are back and I couldn’t be happier.
Another reason Daniel amazes me: If you have been reading this blog you know Daniel’s mad passion for the Green Bay Packers. Today was a huge game that determined them getting to go to the Superbowl. While Rob and I watched the game with him tied in knots waiting for them to win, I watched Daniel in astonishment at his calm and collected manner. He just has such a sheer and utter love of the game that he appreciates it for what it is. He watches a game differently than a typical fan. I can’t explain it, but he sees the game from an analyst’s perspective. Yes he wanted his team to win but he is realistic as well. I think he was more surprised at how well his team played at first. When the game finished Rob and I held our tongues and let him just react how he needed to. I personally had tears in my eyes and felt like throwing up the entire second half of the game. Rob said he was sorry and left for the night. I asked later if he was okay and with a sad face he shrugged and said “ At least they got further than they did last year.” Oy, my heart broke for him. He immediately started working on his P[R]eview show for tomorrow. As I left him alone to go get a cup of ice, I was inundated with nurses and C.A.s all asking if Daniel was okay. I am sure that Daniel has single handedly doubled the Green Bay fan base in the last 6 months. The amount of comments, messages and emails I got checking on Daniel reminded me of how many fans Daniel has. Everyone has grown to appreciate his passion and know exactly how big this moment was. While Daniel was in the shower, with a heavy heart I wiped clean the window that I had drawn a big Green Bay vs Seattle with the NFC championship trophy. Damn, that one hurt. The only good thing about this loss and I mean ONLY is that I don’t have to worry so much about if G-d forbid Daniel is still in the hospital when it is Superbowl. I couldn’t handle him having to watch his Superbowl on this little terrible tv. Plus I also don’t think I could handle the stress of the Packers being in the Superbowl. I was worried sick how Daniel would handle it and sure enough, he rose to the occasion and handled it better than me.
As far as his health status he is feeling great and eating great. Our favorite Dr. Cara Cannon told him if he ate well and tolerated it all day that tomorrow they would remove the NG tube. Now she is most certainly Daniel’s favorite. He thought this was wonderful news and definetly did his part. He ate all day and finished the evening with 4 (small) pieces of cheesecake. I don’t know how bad the removal will be but I know he will be one happy camper tomorrow. In the past few days that he hasn’t had any of the formula through the tube he hasn’t been nauseous at all or complained of stomach aches. He actually said the tube isn’t that bad and he is used to it now…as long as they don’t use it. Hmmm. Tomorrow they will get his current CMV counts and when we get them back on Tuesday will know if he is ready to come home. Please G-d. It will be two weeks and I have had enough. I can’t rush us getting out of here or do anything about it but if I could. Fingers crossed for good results tomorrow. Today is a good day. Although a busy day of drug intervention. Daniel is getting several more IV meds to fight the CMV infection and boost his immune system so that hopefully he is in tip top shape to get the heck out of here next week. He is on his second meal of the day and we are looking forward to dinner. Rob came up today after being out of town for 3 days and couldn’t believe the difference in how good Daniel looks. Doctors want Daniel up out of the bed and moving more to help open his lungs and since he has been on isolation and quarantined to his room he has not been doing anything. At least he needs to sit in the chair a few times a day to be upright. Since it is too boring to walk in circles in our little room and basketball got old really fast in the confined space, we got the Wii Sports disc and started doing some REAL activity. We haven’t played with the Wii in years and it was new all over again. Rob played a little bowling with Daniel for a while but Daniel was active for a long time. It was great to see him up and moving. The Children’s Hospital has done a stellar job outfitting each room with a Wii and Xbox to do there best to keep the kids as active as possible under the circumstances. Check out his moves, but more importantly, check out his smile.
All and all Daniel is doing much better. Even though there was a mess up on a test that didn’t get sent to check on his CMV levels and we can’t get that test run again until Monday by the looks of him and how he is acting we all assume his viral count is going down. As far as the eating, that has not been going so great, but we were steadily making progress. Again all he wants is to get the NG tube out and it is kind of a vicious cycle. They have to keep his feeds going so he is not hungry, but the actual formula is giving him a total stomach ache. So he is full from formula and has a stomach ache but they want him to try to eat real food. It is kind of cruel. BUT TODAY was a big change. He ate a whole toaster strudel for breakfast and then (be prepared) for dinner he had a specially prepared triple burger from McDonald’s and French fries. The caption for the photo below he said is “Reunited At Last” he is such a goofball. It was totally against doctor recommendations for his first introduction to food and I totally expected him to take one bite and be full, but like a boss, he put the fries into the burger and finished the whole damn thing. It has been almost 40 minutes since he ate so I am assuming it is staying down. Let me tell you I haven’t seen this kid this happy or with a smile on his face like this in a VERY LONG TIME. He finished it all and then proceeded to start looking at the Shanahan’s (his favorite seafood and steakhouse restaurant) menu for all his favorite food he wants next. I am tentatively watching for the clock to see if this will stay down and already dreading the idea of telling him he is not getting another triple burger for breakfast. Fingers crossed for holding it down. 45 minutes and he still has a huge smile on his face. We are going to go much healthier tomorrow.
We are on an upward swing in how Daniel is feeling. He is spending larger blocks of time awake and is not needing oxygen at all during the day. He is only using it for part of the night. Tests show his virus is not drug resistant to the one they have chosen, thank goodness and it is slowly doing it’s thing to knock out the CMV virus. The kicker is his level was so darn high when they tested it on Monday 267,000 that he has a very long way to go to have it come down. It has come down enough that the doctors feel they do not need to add a second drug to help with this. This second drug is too hard on his new marrow. Either the virus or the drug he is taking right now are already beating down his marrow and he is needing GCSF (boost) every day now to help support his marrow. It is really all like a math equation and balancing act. His blood will be checked again tomorrow to see where we are at with a few more day’s of viral treatment. Clinically he is looking a lot better though. He has gotten out of bed a few times and is working hard again with PT (this time he is liking Kristin a little more and has not kicked her out yet) . He started this online driver’s ed program and doesn’t like it. HE feels it is boring and wants to be in the classroom with other kids. Can’t help him with this, he will just have to tough that one out. Best of all last night and today he has eaten soup. He is hungry now which is great and at least willing to try to eat (in theory) with the NG tube. He knws that he is holding down the fomula now so there is no reason that he wont hold down food. It just feels weird and the tube makes him gag. Soup is a good start and before the weekend is up, hopefully he will have the tube out. I know he will be a thousand times happier then. Progressing slowly in the right direction in all areas.
Although I did have a decent night sleep tonight, I had a very long and emotional day, needing to recount several events of this past year we have had. I have not taken a chance to look back at all of this and now that I have I realize how awful it really has been. Wow has this kid been through a lot, and yes so have we. Rob said that someone said to him yesterday “I don’t know how you do it. I couldn’t do it” REALLY I thought? REALLY? What would you do? Just drop your kid off at the door of the hospital and walk away. You don’t get to choose your situation when it comes to things like this. You elected to have a child and you get what you get. Whatever comes with it. Now that being said, plenty of parents aren’t here taking care of their kids on an ongoing basis like I am, but that is their choice. I don’t feel I have a choice. How do we do it? That almost makes me angry, but instead I will choose to be sad for this person that they feel that they wouldn’t have it in them to take care of a sick child and weather the storm…but guess what? You do. Somehow we have the capacity to love and have strength and go deeper when you need it. I have found I can live on very little up here with Daniel and small words of good news can carry you very long way and news of concern only pushes you harder to find the strength you have but didn’t know you did. So when asked how you do it? I would have to ask back, do what? Love your child no matter what. Do What? Be there when they need you and even when they don’t want you there. Do what? Put on a brave face and be happy, when you are falling apart inside and won’t let your kid see you cry. Do what? Sacrifice whatever it takes of yourself to stay strong and be able to support your child. I ask you, isn’t this what being a parent is? How do you do it?
I am glad to report that we have some answers. Listen, it is kind of weird to hope for certain illnesses or problems, but if you are going to have something I am glad that we have confirmed todays tests and I will tell you why. Cultures came back showing in fact that Daniel has CMV in his lungs. This means it is in his blood and in his lungs. Therefore, we can take IPS out of the equation and that means taking steroids out of the picture. This is great news. The steroids even though they have only been in his system for a few days have reaked havoc with him. They are awful and have done terrible things to him. He has been sore and achy in his joints and his nausea is off the charts but worst of all his blood pressure has been so high and they have been unable to get it down even with repeated doses of medication. Thankfully now that we can discontinue the Embrol and Steroids and they have increased the dosage of the hypertension medication that will be controlled soon and we can get on our way to knocking down the ACTUAL CAUSE of the problems. Next and hopefully final puzzle piece to make this work properly is the Tuesday test result we wait for, to find out if his virus is resistant to the drug they are currently treating him with. If this is the case, then they will switch the particular antiviral to the one that works. Meanwhile we watch for improvement in clinical symptoms. Since Daniel’s CMV counts last Monday and Tuesday were so very he has a long way to go to bring them down. They will test those levels on Monday again since they don’t really see the levels come down so quickly.
The craziest thing about the day is that with how terrible Daniel has been sleeping and feeling he actually slept through the Green Bay Packers playoff game today. All gear stayed in its bag and he woke up literally 5 minutes after the game ended. But how glad are we that his team won. All the doctors and nurses here on the floor and the one room service delivery guy were so concerned for Daniel and the Packers. It is a true testament to him what he has created. He has created a large following of new cheese heads everywhere, rooting for the Packers. I believe they are more rooting for Daniel personally. Today was a pretty good day. Nothing much new and exciting happened medically which makes me happy. We moved rooms to a nice little quiet corner. We have an exterior part to our room for more privacy from the hallway and talking and lights which is nice and a big bathroom and shower. It is nice to just hang out in the quiet now, especially since I woke up with a headache and haven’t been able to shake it all day. I was thrilled that after Rob got here to watch the football game that Daniel pretty much slept through, that Matthew showed up and we went downstairs for a late lunch. We had such an unbelievably nice grown up conversation and he has been so sweet and kind to Daniel these past couple days and it is making me so happy to see him maturing. Daniel had one bought of nausea which he tryied so hard to prevent from throwing up. Unfortunately he didn’t succeed and ended up throwing up, but very little. The tube stayed intact and we will back off on increasing his rate or amount of formula for a bit. I think he will hold at tsp. an hour for the night and try again tomorrow. His today’s exray didn’t show much improvement but did not show worsening and he is doing better with less oxygen with very short periods of room air. He took a shower and sat in the chair for a short time today as well. Baby steps back are fine for now. I did notice that along with his hair really filling in and growing back that he now has a little mustache. I joked and told him I didn’t like it (because that means he is growing up too fast), he immediately came back at me with “I don’t like yours either.” Yep, he still has his feistiness which will serve him well.
Here is Daniel's new decorated tree. It is a busy epicenter of commotion that is NONSTOP beeping ringing, buzzing and chirping. Many things I can silence when alarming but all only let you have a minute to two between alarming. THe good news is, Daniel must not be critical enough that they feel the need to come running for routine beeping. Now that we are tucked in the corner suite it is less likely that they come running for some reason. I guess I will be back to adding up my miles again. THe up down every two minutes gets me that much closer to my new year's resolution of building an ass this year. Yep, you heard me. Things changed so many times today it is hard to believe we made it to the end in one piece. I told our nurse: If she was Kim Kardashian she would be out of a job, because she has run her butt off for the past two days with Daniel. There were so many plans today, we ended up on with PLAN GG after going through the alphabet at least once. Whew! I have to say I am comfortable with where we are at tonight with everything and hope we can just not have anymore surprises or changes for a few hours. I will save everyone the details of the final result but as it stands we are most likely looking at CMV in Daniel’s blood and now crossed over into his lungs and gut. Again we all have Cytomegalovirus but our antibodies and immune system can squash it out when it is acting up. Daniel’s is like an activation of CMV as a consequence of having no immune system after transplant. The doctors strongly believe this is the reason for this sudden turn of events within Daniels lungs and it is causing IPS- Ideopathic Pulmonary Syndrome. Final cultures over the next days will confirm this. As results are known medications will be tailored to suit the culprit. The three dangers are Bacterial, Fungal and Viral and he has been on many anti- everythings for all of these to prevent. Now that he has a few diagnosed of these we have started several different cocktails of medications. I am not remembering if I had written that he also has a CoaG negative staph infection in his line, which is Bacterial. I have been told that the order of fighting these from easiest to most difficult are bacterial > fungal>viral. Again another difficulty is how hard these meds are on the kidney and liver and then if they even will work. These are some other tests that are pending to see which are drug resistant to which drugs so we can side step those and get to the ones that are effective fastest. The side effects of some of these drugs, aside from helping the problem are numerous as well as their interactions, however most importantly is the effect on his new bone marrow. They watch everything so closely at all times so that they are on top of all of these things right away. Particularly the lung situation because this can spread like wild fire and can be fatal. As bad and scary as that sounds I feel he is comfortable and being watched. They are doing everything to find out the exact type of infection he has and the right treatment. Until then they have actively treated the inflammation with EMbrol and steroids that have worked quickly. The feeding situation has not been desirable but will just have to be what it is. Daniel is very angry about the NG tube which tey were unable to place below his level of the stomach so it is actually in his stomach and they are giving him the most minimal amount possible to restart his nutrition. Because it is emergent that they get nutrients in him for the metabolism of the medications and most importantly the protiens he needs to fight the inflammation in his lungs they inevitably have to start him on the TPN (liquid nutrients) again this is very hard on his organs but they have no choice at this point but to kick start his nutritional levels artificially. They can’t wait for him to be able to hold the amount that he is actually requiring. They believe with the Embrol and Steriods on board and the tiny bit of food starting to be given in the tube (about a teaspoon an hour) and then supplementing with the TPN that we will be in business and maybe feeling better soon. By the time we figured this plan all out it was about 5 PM. After Rob left and things calmed down Daniel looked at me with pleading eyes and said he was so hungry asked if he could please eat some real food. Oy, how could I deny this. The doctors did not really want him eating anything of substance yet today in fear of him throwing up. They do not want him throwing up the feeding tube after what it is taking to get it to stay down (again I can’t believe he hasn’t pulled it out.) He didn’t want anything easy like applesauce to start off. Remember this kid hasn’t kept any food down now in over 7 days. Given the chance he would first pick sushi, then a Shanahan’s steak, but we compromised on some noodles. I gave him maybe a dozen lo mein noodles and he ate them one by one like they were the most delicious thing he has ever eaten. And he held them down. Woo hoo! He actually got into the shower and for once did not throw up after. It was a quick shower but I think after two days in bed he knew how bad he needed it. He is still deathly afraid of and uncomfortable with the tube and has come to realize that he may never get used to it, but as long as he needs it, it has to stay. Maybe with increasing amounts incrementally and little bits of solid food along the way will help him feel better and heal faster and just start a good snowball effect. The worst news of the day came when we found out that our stay here won’t be through the weekend. We are looking at several weeks to months with this and that has really thrown us all for a big loop. So although the DAY 30 and the DAY 100 are all big milestones, it has gone to show that this is truly going to be a year of healing. This is a big step back and keeping his spirits up to keep him going through this next phase is not going to be easy. I got to run home today to get some clothes and things. I only packed for a couple days and knew I was going to need more but wasn’t prepared for that much more. I did bring his Green Bay Packers flag to cover the light from the door so now he will feel a little bit more at home. Shit, I hate thinking of this as our home. I know I probably forgot more but tonight we will try to sleep and with the aid of earplugs for Daniel for the first night so he can maybe block out some of the beeping, I hope he can finally rest. Tomorrow we will start to redecorate our window and he can chose something for me to draw for him to help brighten his day.
And the hits just keep on rolling. Today got off to a banner start when the doctor came in and declared Daniel “officially “ nutritionally deficient. He was extremely serious about needing to address this issue immediately and the decision was made for him when it was determined to drop an ND tube. This will bypass the stomach to hopefully bypass vomiting. Daniel was very upset that we trumped his choice and the doctors tried to reassure him that it is not his fault and we are not punishing him but that his body just isn’t cooperating and because of the dextrose in the IV fluid in his empty little body it is creating a perfect breeding ground for bacteria and infection, so we need to get him another source of nutritional intake. So as that decision was made, then there was only the follow through to go through. I have to say this may have been one of the most traumatic things Daniel has ever had to go through. He was scared and angry and upset and all those things when you can’t relax are not conducive to a smooth insertion of an NG tube. Needless to say it did not go well and he was a hot screaming mess that disturbed the entire unit. Now that it was in, but there was no consoling him it was not sitting right and he would not settle down and he needed to go downstairs for a chest xray. One because his oxygen level keeps dropping and two because they need to see the tube placement. He uncomfortably made his way down to xray with muffled screams in the hallways and when done found out not only was the tube in bad placement but that the chest xray itself looks bad. Bad placement means no eating or using the tube until it can be adjusted and at this point the next person to come close to him is surely getting punched in the face so now that is in holding pattern and now we are highly concerned about his chest and lungs. But he is now also on the no eating list because the chest xray indicates that he needs further testing to evaluate what they see. A few hours later and more information than I can process and Rob finally arrived after 1pm. By this time Daniel was in agony with this NG tube and begging to take it out. I can not at this point it hadn’t occurred to him to pull it out on his own, but it didn’t. Now he is so uncomfortable and Rob doesn’t deal well with Daniel’s discomfort. I have spent the entire morning trying to calm him and trying to explain that he did not do anything wrong or ask for this, his body is just needing him to accept whatever it needs to to get better and unfortunately it all sucks and we just have to get through it. Well that isn’t getting me anywhere in the mental health department and before we have to go back downstairs for a PET/CT SCAN we compromise and remove the ill placed tube for a while so he can get a little rest but the deal is that the tube will be replaced when he is asleep for the lung biopsy he needs to have. The tube in fact was kinked in his stomach which ultimately would have probably caused a feeding issue once we tried to use it anyway, however that is not an issue anymore. They will insert a smaller tube which will still be uncomfortable and feel weird, but it in no way should hurt. He needs to remember he felt the same way about his broviac chest tube that I sure he is now glad he has that took him a while to get used to and sort of forget about. As fa as the two major lung tests. They will be to determine what exactly the infection is that is going on. Is it a true infection that will be detected by the CT and can be treated with Bactrum (which has negative effects and fights against the transplant-not good) or is it something they find during the lavage procedure (lung wash and biopsy) that will more likely indicate my greatest fear of Graft Versus Host Disease. Neither a good scenario but in the grand scheme of things this is early in the game and although his oxygen levels are dropping they are not in a dangerous low area, just are very concerning and indicating a looming condition on the rise. The name of the game in BMT seems to be head it off before it becomes something…now if you could just tell that to the pulmonary team that we are waiting for before the end of the day. On a bright note. Daniel’s BK levels came back low and he is off all medications for that. Yeah, wah, wah, wah he is on about 6 more now for nutritional stuff, Album, magnesium…So all that being said we just met with the Pulmonary team that will be doing his procedure tonight at 7 pm and basically the deal is infection versus imunnosupression therapy…stay tuned. We will know more tomorrow. I am just glad they are proactive and always thinking of the best aggressive treatment for us.
Today was a long rough day. A lot of ups and downs. Daniel was up and down with a fever all day and up and down with his moods and up and down with his nausea and vomiting and even up and down a lot with aches and pains in his joints. It kind of looks on the surface like a full body flu to me. Thankfully he slept a lot. The nurses and doctors were great about his birthday and I think he was only upset when it came to food and meal time when he wanted special birthday treats and knew that they were not happening. Once again his body is not cooperating with what he wants and he is not even sure he wants what he wants. Poor guy couldn’t keep down what he wanted at this point anyway, which brought us to one of the least welcomed visits of the day from the nutritionist. Seeing as though his weight is down so much again and he is so weak and even whatever his caloric intake is, is coming right back up we are at decision time for dietary concerns. If he can’t keep weight on he won’t be able to get strong enough to get better. Well that is not exactly true but the weight is definitely a huge factor for keeping his strength up and getting better faster (as we have already seen). There are several options and several of them are good but none of which he likes. He does not want an appetite stimulant because it scares him too much because of what happened last time he had one. For those of you just tuning in he ended up in the ICU because he had what they determined was a stroke or some type of overdose reaction last time and it was basically scary as shit and there is no way he ever wants to experience that again. I don’t blame him. I saw him trapped in his own body and I know it is my guarantee for life that this child will NEVER do illegal drugs. Even though the doctors told him that these appetite stimulants will be very different, he is not hearing it. Period. End of story on that route. Plus I personally think it is kind of cruel to stimulate an appetite and make hime really hungry for food that his body can’t hold and that he will just throw up. Another option is TPN which is liquid nutrients that is okay, but not the greatest option. It is the medical meat and potatoes and he has had this before. It is in an IV and one is white and one is in a brown bag (hence the meat and potatoes). It is not directly feeding the gut, so it is not the most organic way to go but it is medically sufficient and it will fit the bill for nutritional value but it pretty hard on kidney and liver. This is probably the Doctor option, but the best option and nutritionist choice is an NG tube. It may or may not work because chances are it could still make him nauseous and throw up but they could try to bypass the stomach to avoid this. They say he should feel more full and he will get digestable food directly to his gut which is the most natural. At a sooner point he will feel better because he will have more caloric intake which will in turn give him more strgth and enrgy if he can keep the intake in. Plus he can eat on his own as well with the NG tube. So what is Daniel’s choice, since it ultimately is Daniel’s choice…none of the choices. He has chosen to just eat. Seriously? Dude it’s not working. He said he will try harder and try to eat even if he doesn’t want to. So what happens, dinner rolls around, he gets upset he can’t have what he REALLY wants for birthday dinner. Says he will have room service…gets upset because he hates the thought of room service and then I go to get him soup. I finally get back with the soup and after several excuses to not eat it he finally forces down a few spoonfuls of broth avoiding the chicken BUT eating a few grains of rice. I swear I am living with a daughter with an eating disorder at this point, but try to understand how hard it is for him and try to not badger him about how he has to try harder to eat more. I leave it at a few spponfuls trying to remember he hasn’t held any food down for almsost 4 days now and hope for the best. He made it almost 20 minutes before throwing up. He felt so defeated. It is not for not trying. His belly and this virus is just not cooperating. Again the doctors assure us that this is par for the course and it is what they expect to see with these viruses. By this time he has started his Anitbiotic for the CMV and they have told us that this morning his levels were over 200,000. Again treatment typically starts at 1,000. I was saddened further to find out that CMV can potentially be tough to treat and although does not typically go further that this stage to attack further organs or systems can be lengthy to knock the numbers back down…argh pesky numbers. Now we want these numbers to go down. We were informed that we should plan to be here at least a couple of weeks. Tomorrow I will go home to pack some things for our stay. But wait as I am now getting ready for bed and writing a list of things to gather at home in walks an Attending to inform me BAM! Another one of his cultures came back and 1 of the two that they grew came back positive for a bacteria POW! So now we have Viral and Bacteria on board. Double whammy. Now she did say it could be a false positive and they see if the second one grows and they draw another one (which they did already as we were speaking) but to be safe they can’t give it a chance to grow at all so he has started ANOTHER different antibiotic for this infection now this means he is on three different IV antibiotics right now. The thought of this at this point makes me want to vomit. The one they just put him on (hopefully short term) is the one he was on back in June which has already caused some kidney damage. Do you know the repercussions of long term use of antibiotics on the body. Look it up. they are just playing with petri dishes and test tubes trying to balance levels to keep everything in check and not upset the balance. He was going to come off of a big drug on Friday. Instead he is now adding more. I think this brings his total up to 38 pills sprays or ivs drugs in the morning and then 42 plus at night. Yep, I want to puke for sure just thinking about it. Again I remind myself every hour that this is all part of the process and he is actually doing really well overall. Then I wonder if I am kidding myself. Are these hiccups, speed bumps, whatever you want to call them. I have to believe they are. I am not blind, or naïve, I know how bad it all stinks but when I really think what they did to his body and the miracle of what is happening I know that it is going to take more than an instant miracle to just make it better. It is going to take a long hard road of rehab and repair until it gets to the point where we can say he is OK or he is fine or he is all better. I wish I had a crystal ball and I know when that was going to be. I have to put it all in perspective and slow down for the marathon they warned us for. I guess I got excited about going home the first time and then the second time but now after being back ---what is this the third time I won’t get so excited and just slowly slip into the steady pace of reality an start thinking about my running race as more of an ocean and just ride the wave. Mahalo friends. Come along with me for the ride.
So just when you get a minute to relax and blog…yesterday I guess I prematurely blogged. Is that a thing? As Daniel was having a good afternoon sleep he woke up with a bit of a broken fever and as he was taking a nice long shower the clinic called with some test results from the day before. I could tell in her voice it was not good. She told me that they have been watching Daniels CMV levels for a couple weeks, as they do routinely on all BMT kids and it has been trending up but spiked through the roof on yesterdays tests. CMV is cytomegalovirus. We are all carriers of it and it is another one of those viruses, like the BK virus that we can all fight when we all have normal immune systems, but since Daniel has no immune system yet he can’t fight even a small or simple virus. I guess the level for treatment is anything over 1000 units and Daniel’s level was over 127,000 on Monday. This explains his feeling so awful we think. So as bad as we felt having to have him come back to the hospital the night before his birthday, it was a no brainer. CMV can potentially attack multiple organs and systems in the body but if caught early enough, which we have, before it is at that stage it can just be treated with IV antibiotics which we have now started. We could not start them last night because he was so severely dehydrated from not being able to eat or drink for the past several days or hold anything down. As Brandon, our favorite P.A. said, hopefully we will just be here for a 48 hour tune up. Please G-d. Daniel didn’t seem to have a problem coming in. He has been hard to read a lot lately, but he knows how bad he has been feeling and birthday or no birthday he just wants to get some sleep and feel better. I hope with all the fluids he is getting then a few doses of anitbiotics that that is exactly what will happen sooner than later and that maybe we can pull out a few birthday surprises for him. It has been very crazy at home and I have not been able to do a single thing to make this day more special than any other but he woke up this morning to a sign the night nurses had all put together for him which was nice and made him smile. That was a nice start. We will see what we can come up with. If anything, Daniel is more understanding than any other kid I know. Stay tuned!!!
Daniel is not feeling so good today and actually took my suggestion for a change and just crawled back into bed to go back to slee, instead of trying to fight the exhaustion all day. For the first time since I remember he actually said this morning that he really didn’t feel good at all. Yesterday at the hospital when we were walking between different appointments and we were kind of rushing because one appointment ran late before his scheduled clinic, he actually asked me to slow down and he had to lean on me for support. It is really heartbreaking. He is supposed to be getting better at this point. Technically he is and the professionals are trying to tell me that he really is. This is exactly where he is supposed to be and everything he is supposed to be experiencing and feeling right now is typical. Perspective, perspective, perspective. I am hitting another tough spot again, I guess with his birthday coming up tomorrow. This is my reflection space so it is my space to share. I am being pouty. I think more for him than me. He is being so good about it to the point it is killing me. His New Year’s resolution was to tell me something he wants to eat everyday so that I can help him get better without me going crazy trying to come up with something that he really doesn’t want even with all his restrictions, and he is almost whimpering naming things because he has no appetite a doesn’t feel like a single thing. I make him anything he asks for and he doesn’t eat it. Have you ever been that sick that you don’t want anything. And remember, this is a kid that loves all food. Yesterday, his special BMT nurse lifted some food restrictions and you would have thought he would have been the happiest kid in the world and he teared up, because he doesn’t even want them anymore. Sadly enough, yesterday was Monday and he didn’t even do his radio show. He is that down. I asked him a few times now what he wants for his birthday and he just says nothing or he says he wants to sleep. The one thing I wanted to give him was the sushi for dinner but that hasn’t worked out and even if it would have he probably would have just been upset because he can’t really eat it right now anyway. I know it will all come back and he knows it too. It just all seems so far away again. I am a so sick of saying poor baby. I don’t want him to be so stubborn and I want him to buck up and eat a little soup I made, but then again how can I force him to do that if I know he knows he is going to throw it up. But then how can I expect him to have energy and stay awake if he doesn’t try to eat. It really is a vicious circle and I am mad at him for giving up to the fact that last night he said he knows he is going to end up back in the hospital and getting an NG tube because he can’t eat. Our only hope here is maybe that we get some good test results back in a few days and we can stop IV fluids at night that will help him rest better at night that will get him more rested that will help heal the cycle a bit to help the exhaustion. Then Friday will be DAY 56 and on that day for some reason we stop one of his antisuppresant drugs. The nurse says that this may help with some of the nausea a bit so there is a bright light. Here is hoping for that. That takes 4 huge pills out of our day at least. This increases the chance of Graft Versus Host Disease arising but they do not think this is likely since they have not seen any signs of this yet. This just reminds me it is day by day and we just take it as it comes and if this is how it goes then so be it. I am making the dinner he requested (that he probably won’t touch) and at least Matthew will eat it (Booboos meatballs and rice). Grandfather Moish is going to pick up some ingredients I can’t get out to get since I don’t want to leave Daniel sleeping and Matthew is back at school as of today so we will be back to a tougher schedule and are now back to three a week appointments at the hospital but again, happier to be home, right?
Frustrating couple of days. Daniel is not doing so well. He is not really eating and doesn’t have much of an appetite. What he does eat he mostly throws up and his energy level is very low. He is feeling so couped up and the isolation is really getting to him. We took him to the school to walk in the gym yesterday and throw the basketball around and although he was so happy to get out and especially talk football with Josh, his endurance was minimal. Today he is very tired. and extremely sore from the half a dozen baskets he threw. He is more frustrated with his frustrated with himself than anything else. He can’t decide if he is sick, nauseous or hungry and his moods are just as erratic. His weight is quickly dropping again and I am afraid of what it will be when we get to clinic tomorrow morning. What I think scared me most today was when he started getting a fever but it was low and came and went all day. Surprisingly football isn’t even holding his interest much right now. We will try to get back on track tomorrow with the help of the doctors and Bob, our favorite pep talk psychologist, and possibly a new cookbook I got and am finally getting to. Matthew (kind of) helped me shop today and I picked up lots of special things that will hopefully help Daniel feeling good and getting him nourished. I have soup started and cooking overnight and that will be a magical go to for all his symptoms hopefully. The elliptical comes in the morning and although Daniel is very afraid to get on it, because he is so weak all over again, we will work together, very slowly, getting him going again. And then hopefully starting Tuesday, school starts. YEAH!!! He needs something to work on and get his mind working again. He needs to have a predictable schedule and some goals and daily activities. This home arrest thing sucks. I have gotten out to the store a handful of times in a rushed, half hazard manner, but nothing in a relaxed or enjoyable way, and although it is a bit of a change of scenery, the corner of the couch for Daniel has become a sort of purgatory. Poor guy. Matthew goes back to school tomorrow and we will really be on our own again. We are just past DAY 50 now and although that seems great and like forever already it is also just halfway to DAY 100. We need to hang in there. I think we have made it through the worst of this nasty BK virus and he is not really feeling any symptoms of it right now. If we can keep those at bay long enough for the doctors to peel off the night time IV fluids then maybe that will allow for a more restful night sleep. I know that is one thing he is yearning for. Let’s hope for that one little positive for tomorrow morning.
After a nice family dinner together for New Year’s Eve we watched a little tv together and went to bed to end the night like any other. Daniel had a really rough night that almost ended us back at the Emergency Department but we tried really hard to relax and work through very bad chest pains. On the universal pain scale he reported to the on call doctor at about 1:30 a number 7 and as far as heart and chest pain that is a GO directly to the ER. But some calming exercises and giving medicine a chance to work resulted in total relaxation and sleep came around 2:45. I think it was more of a deep heartburn and indigestion that is typical because of the state of his gut right now. His poor intestines are so vulnerable and when he wants to eat he doesn’t limit his meals. He really should eat more small meals all day, but then again so should we all right??? Anyway we eventually slept together sitting up on the sofa which helped a lot but as far as restful, not so much. The dog woke us barking early and then Rob and Matthew were up and getting ready to go skiing by 9. Daniel and I stayed on the couch all morning after finishing morning med rountine and watched the Rose Bowl Parade and went back to sleep. After nap Daniel was ready for a full day of college football. My cleaning woman called to tell me she is sick and is afraid to come to the house so I got right to deep cleaning bathrooms and changing sheets. I typically wash the floor every other day anyway so no big deal to do it again today. Today I also got a chance to clean another cabinet and another corner of a room. It amazes me that it never ends and there is always more to go through. We bit the bullet today and I went and bought a large piece of exercise equiptment. I feel that Daniel has settled into a pattern of inactivity and it is not a good thing. With the weather being cold out now it is difficult for us to get outside and he is very hesitant to go walk at the mall before they open. I am convinced if he doesn’t recondition his body he will not get better. We will put this large new piece of furniture in Matthew’s old bedroom which was going to become our master bedroom extension. This of course was the plan as we moved him into the basement but NOW we can’t have and construction or projects like this for another year so see how it all works out. Priorities have changed and I take this as a sign that it is a chance for our whole family to get into a bit better shape. I hope we can all take advantage of this new opportunity that is now a built in feature staring us in the face. Funny how it comes at the new year when we all make that same silly resolution. Daniel and I ended up having a fun day and evening together having dinner and renting a very funny movie together and after finishing all night time IV meds actually ended up getting to bed at a decent hour. At least I did. I hope we both get a restful sleep and Rob and Matthew are equally enjoying each other’s company. Tomorrow we will have a day together at home as well but Daniel has already informed me that he has reserved the day for some football marathon something or other (I know shocker) He does not have his radio show so he will watch his marathon and I will attack another job at home. Maybe the basement, that is a full days work. I better go start resting up. |
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July 2016
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